Hovering on the edge

[NettleTea]

I think we may be reaching the end of the line with my daughter and school

She has cystic fibrosis, has been quite unwell this year so far, in currently in yr8 and is out of school for a mix of missing for hospital/health, but mainly social anxiety and school refusal.

She was doing well at a LEA run little unit - has just had a wonderful report from all the teachers on the online learning, but the area co-ordinator (Very much against my advice and desires btw) has proposed a change that has thrown us right back to the very start.

She probably has been going full time for about 2 weeks, so not that long. On Monday we had a meeting back at the school, which I was really pleased with her that she attended too, and at which the area co-ordinator proposed that she come weekly into the school with a teacher from the centre, to do the school work in the library. At this point DD completely shut down. She said she was not going to, they couldnt make her, she hated the school, she was NEVER going back, etc etc

I had said to her to view the meeting, and any subsequent visits into school, as a way of helping her get over her anxieties, rather than as step back into school, but that I think she certainly needs help with that anxiety before we take any new steps. She has been enjoying the online stuff until now, and HAD been enjoying the unit, apart from this LEA lady keep telling her that she will be back to school soon.

Since Monday she has refused to even go into the small unit. She has actually started throwing up and all the anxiety issues are back in full force, worse than they were before. Her CF psychologist saw her a few times since November when she was in hospital in London, but has gone on maternity leave. she diagnosed extreme social anxiety related to the school environment, and to groups and large numbers of children in her peer age group. She just about touched on this in her sessions because she was also dealing with her medicine/therapy non-compliance. As she is in London, and also going on leave, she has referred her locally for CBT/anxiety work with local CAMHS, but this hasnt come through yet. She had said that her anxiety was so high that she shouldnt be forced into school to face her fears. I told the Area co-ordinator that I didnt think we should push her into going back into the school until she had some psychological support in place, but she didnt want to wait that long. She wants to do it now, this week.

She says DD is bright, chatty and sparky in the unit, and I think she thinks that means she is confident. But anyone who knows DD knows that is naturally how she is. She may have been nervous about going to the sessions, but she wasnt overly anxious. She may have rather stayed at home, and had a little resistance to going full time, but that was a 'want' not anxiety, and until the LEA lady kept talking about speeding her back into school she was enjoying it. She doesnt seem to get that she is quite happy in most situations - she has even gone back to dance and really enjoyed it, but school is just far too much. She is terrified that they will see her, that she is so overcome with fear about what people will say or do, how she feels. she started hitting herself and scratching her face, and her behaviour at home has escalalated back to how it was before we even started to try to get help. I have in my mind that an incident at the school disco, in combination with text bullying (which school dealt with wonderfully I must admit), and the already anxiousness of school in general is too big a boundary - from talking to her I feel like she thinks she has failed or embarrased or let herself down so much she just cannot face the people.

I sort of dont know what to do. I dont agree with how the LEA lady has handled it. I tell her that no one is likely to even be thinking about it - it is all in her head. That you cannot go through life expecting to never mess up or embarrass yourself in front of people, never make a mistake - there are always going to be poeple you dont like, people who will laugh at others, but you cant run away from a situation every time you make a mistake, or someone laughs at you. And yet the next minute she is wanting to dye her hair wild colours, wear clothing that would make her stand out, etc. A real dichotomy - wanting attention, but only the right sort, and with an ego that is so fragile and paranoid that she is looking for criticism and then wants to never see anyone ever again who has criticised or upset her. She is a wonderful girl - I encourage and support her that she is fantastic just as she is. And at primary she loved school and had lots of friends.

Its also a shame as she has just had a feedback from all her online lessons, which were A*, with top marks for attitude as well. I dont want her to lose that, I cannot afford for her to do something like InterHigh online (which is the same thing, but private) - there is good stuff like KhanAcadamy, but its self led, rather than 'live' and she does seem to do really well with live interaction. If I deregister then I lose all the online stuff she has been doing well at, but I cannot agree to the timetable to return to school that the LEA are pushing for. I am not convinced that she should go back into school at all - she seems keen to go into college later.

I am thinking more and more about HE, but in a way (because of previous behaviour problems) I am wary to be seen to be letting her get her own way and forcing me into a situation where I have no choice. I would like to have made a decision because it is best for my child, as I feel that even if the result is the same - that she is HE'ed - psychologically I need to know I made that choice or I fear I will feel resentful about having my hand forced, and she will feel that if she kicks up a great big tantrumy fuss then she will always get what she wants over and above what everyone else wants.

her lung function has dropped again as well.

You poor, poor things.

Why not get her signed off sick (with anxiety) from the unit for a month or six weeks? That gives you time to get CAMHS moving, and gives you both a breathing space, but without her losing her place in the unit? If that sick leave is then fabulous, you can then present, as your idea, "hey, why don't we go on doing this and just stick two fingers up to the stupid LEA woman?"

In your position, I don't think I'd be able to restrain myself from writing something rather like you've written here, but carefully phrased so that it is an "unfortunate misunderstanding" rather than "this LEA woman is a total numpty" (ahem) and then send it to whoever is replacing her CF psychologist while on maternity leave, and to the LEA woman, and to the head of the unit, and to the head of education services in the LEA. Or you could even throw yourself on the mercy of the person in charge of education welfare in your LEA (assuming it isn't numpty lady) and say "we were told not to put pressure on; numpty has put pressure on and my fragile child has snapped. We now need urgent damage limitation. What do you suggest?" (and keep pushing until (s)he offers the things you think are actually needed, e.g. taking pressure off your daughter to go into the unit, while maintaining her place there; taking reintegration into mainstream school completely off the agenda for the foreseeable.

You know, of course, that in the end the bottom line is the bottom line, and that's why numpty pushed. It'll be to do with budget pressure and nothing at all to do with your daughters needs. I do not excuse numpty's actions for a moment.

The numpty pushed because the purpose of the special unit is to get children back into school. There will be other children queuing for their turn in the unit. The staff have deadlines so as soon as a child appears to be thriving the staff have to make space for the next person. The unit will have small classes with lots of 1 to 1. Councils can't afford this (just like most parents cant) so must get children back into the 30+ classrooms asap.

I'm not on their side but can see their point. When money is so tight that our council doesn't have an ewo,(education welfare officer), staff who worked full time organising nursery funding now have a 6hour contract.

You must carry on fighting and ommmward's advice is good.

I have been into the school today and, to be fair to them, they have been very sympathetic and agreed that moving too fast was a very bad idea and that they are not pushing to speed things along.
Ialso spoken to DDs team at Kings and they are running around trying to find where the CAMHs referral has got to (letter has only just arrived on my doorstep today) and to speak to their specific social worker on Wed. recommended going to GP and getting her signed off.
I have brought home some pretty interesting work from school, and suggested that she tries to do more at home than she did at the small unit, along with the online stuff, and we would be in a good position to say we will keep the online stuff and work directly with the school.
She has even said she would be happy to go into school with me to see the subject teachers and talk about the work. She likes most of the teachers, its the kids she cannot deal with.
I doubt she will go back to the small unit, she has completely lost faith in this LEA woman and feels bullied by her - the last thing she needs if bullying has been an issue.
The bottom line with me is my child's wellbeing - her health (mental and physical) comes first, her education (which the school say she is keeping up with) comes second.

I am waiting until I get the sign off by the GP. Then I will write to the LEA and set out what the health professionals recommend. In a way, having a medical need and accessing the online learning for that, we are lucky that we can use the fact that stress stops her looking after herself physically too.

Your daughter is so so lucky to have you as her mother. You are ON it, lady!

We are also lucky because we are going on holiday next Thursday for a fortnight. It is a holiday which is partly funded so that she can get into the sun to help boost her health in these horribly cold, wet winters. And get some exercise. It ties in nicely with one of the projects that she will be doing for the schools Geography work so she is planning to do a 'Vlog' and make a journal. whether this will transpire is yet to see....
so we only need 7 more days to get out of school!!

My daughter's lovely medical team have stepped in. Team up in London trying to fast track the CAMHS referral, Consultant writing to head of children's services and GP signed her off from the small school until her referral is through. They are highlighting how stress exasperates her health condition, and that she refuses to do her medication/physio when in a panic situation - they referred to it as a in MH crisis. Been to the original secondary school who are giving us work to do at home, and they confirm they are not pushing for a return in any timeframe, just take as long as she needs, they just would love to see her when she is ready - be that part time or only for meetings. The school being so kind has put them in a much more favourable light than the so called 'flexible' schooling.
So, until further notice, it looks like we have project work from the school, plus online lessons to access as and when. And no pressure.
She wants to start making some bits and pieces, and as our holiday is in Africa and that is the project subject for Geography, she is planning something to do there as well. She has been given some History work about the civil war, and we have a friend who is a historian at Oxford uni, and an expert on war and weaponry with Bonhams who spent many a year doing re-enactments, so she is going to talk to him. she is very passionate about the learning, keen to talk to adults (even teachers) but just cannot do the school environment.